Consumers United for Evidence-based Healthcare (CUE): Development of a consumer advocacy coalition in the United States

Article type
Authors
Lynn-Gordon J1, Bernard S2, Warren B3, Corry M4, Santa J5, Dickersin K1
1Epidemiology, Johns Hopkins Blooomberg School of Public Health, Baltimore, Maryland, United States
2SafeMinds, Aspen, Colorado, United States
3National Coalition for LGBT Health, New York, New York, United States
4Childbirth Connection, New York, New York, United States
5Consumers Union, Yonkers, New York, United States
Abstract
Background: CUE was formed in 2003 to contribute to attaining a consumer perspective in evidence-based healthcare (EBHC). The mission of CUE is to promote the health of populations and the quality of individual health care by empowering consumers, public health policy makers, and health care providers to make informed decisions based on the best current evidence through research, education, and advocacy. Objectives: To describe a model for consumer contributions to and leadership in EBHC. Methods: In 2003, the US Cochrane Center convened an organizational meeting in Washington, DC of consumer advocacy organizations demonstrating interest and leadership in EBHC. CUE staffing includes a half time Coordinator. Results: CUE has grown to include 26 organizations covering a variety of health issues (eg, childbirth, autism, breast cancer, complementary medicine) and populations. CUE elected to pursue an internal agenda of education of its constituencies before making specific requests of policymakers. As a result, in 2007 the USCC and CUE launched an online course Understanding Evidence-based Healthcare: A Foundation for Action, accessed by thousands worldwide. CUE also provides education for consumers through its annual meetings and workshops, many in partnership with CCNet. Wiley has provided CUE members with a free subscription to The Cochrane Library, and many members contribute to Cochrane and other review groups through peer review and development of plain language summaries. The USCC and CUE provide a clearinghouse of consumers well-versed in EBHC, for decision makers who seek consumer input. In 2010, CUE will host its second Summit of consumer advocacy organizations. Conclusions: CUE is a vibrant coalition of consumer health and advocacy organizations in the US. It serves as a model for organizing and educating consumer groups in other regions to contribute to EBHC. Funding: Agency for Healthcare Research and Quality.